Hoping for some customized advice from smn / rob / whoever

Hoping for some customized advice from smn / rob / whoever

I've lurked this forum on and off over the years, but just registered. On the one hand, I don't think I'm a special flower, my basic problem is that I'm spending too much time thinking about phantom noises in my head. That said, the path I took to get here is a little different than a lot of people's, and I'd be really curious to see what people might have to say to me.

Here's my history, as briefly as possible: When I was 16/17, I took a fair amount of LSD. Up until that point, I'd never really understood my own mortality, so that basic coming of age stuff got interpreted through this crazy psychedelic lens. I had an existing history of ADHD and depression meds (amphetamines, SSRIs, you name it). When I was about 20, I developed visual problems consistent with "HPPD", which are basically the visual equivilent of tinnitus. Extra halos on objects, afterimages, 'faces in clouds' stuff, seeing static in dark surfaces, etc. As I googled HPPD and found an HPPD forum, I learned about tinnitus because many people with HPPD also have tinnitus. I started worrying about this and monitoring my auditory sensation with the same intensity that I was auditing my visual senses, and POW, almost overnight I developed tinnitus. All of this kicked me into a pretty severe anxiety state, and I was prescribed Klonopin in late 2001. I took it until 2006; I tried to come off rapidly once in 2003, and instantly my tinnitus started bothering me again. I had an extremely difficult time coming off of Klonopin in 2006; finally I had to crossover from 1.5mg K to 30mg Diazepam and then taper that over a period of a year. Looking back on my notes from that experience, I see that when I got down to about 7mg my tinnitus started bothering me again.

I stayed off benzos completely for a year or more, and in that time period I was not especially bothered by my HPPD or tinnitus. I think that at any given point if I looked for these things, they were there, but I simply wasn't monitoring them. However, in this time span I developed an oddity with the musculature in my neck (google "hyoid syndrome") which is a similar thing: it's a benign (though sometimes painful) sensation from a specific spot in my throat, but I became obsessive about it, spending a lot of time googling it, trying various snake oil cures, and overall wasting far too much of my day thinking about the sensation. I began taking narcotics sometimes to get away from the sensation (and also because I've always liked narcotics a little too much).

I went to a lot of concerts in these years, but because of my earlier experience with tinnitus, I was always very good about wearing hearing protection. In the spring of 2010, I went to a single concert without plugs, and it was a crazy loud show. My wife got right up front, but I felt like I was doing damage just being in the room, and I stayed in the very back and left before the encore set was over. My ears rang in a way that they had not in years after that show. The next morning, they were still ringing, and the 'bad' ringing from the show persisted for several days. At the end of that week, I smoked some pot which made the ringing come back to a SCREAMING level, and I barely slept that night. The next day, in a state of severe anxiety, I went to my GP who gave me more Klonopin. Despite the fact that I'd had a very hard time withdrawing from it once before, I started taking benzos again.

Over the past two years, the degree to which I'm bothered by all this stuff has varied based on three things:

* how much benzodiazepine I am consuming

* how stressed I am

* how busy I keep myself

About a year ago, I decided that I again wanted to get off of benzos completely and really give myself some period of time off of all drugs to see if I can find a non-chemical way to adapt to these problems. I know long-term benzos are a somewhat controversial subject on here, and I am not trying to tell anyone else what to do. I only know that for me, if I can find a way to have a decent quality of life without being on benzos, I want to, because I'm only 30 and I worry about the long-term consequences of taking benzos longer than I already have. I also think I've maxed out the curve of how useful benzos are; doses that "make my problems go away" also disrupt my short term memory, make me a worse employee, etc. Again, I'm not sitting in judgement of anyone, I'm just trying to stave off the inevitable comment of "well if benzos make you not think about this, why not just keep taking benzos forever?"

I tried to taper myself directly off the benzo I was taking in 2011 (phenazepam) and was successful in reducing it greatly, but when I got to very low doses, I ran into severe problems with anxiety and tinnitus again. I crossed over to 7mg of valium in February of this year, and have been slowly tapering it ever since (presently at 4.35mg a day). I know that 4mg of valium is a pretty insignificant dose, but I still expect it will take me several months to get from here to 0mg, because of how dependent on them I am. I believe there is a neuromuscular component to my tinnitus; I often find myself tensing my face and jaw muscles and having pain there, and think this corresponds to worse ringing. I've had systemic problems with trigger points and muscle knots, I've read Claire Davies work on the subject, and she's got me pretty convinced that masseteur problems go hand in hand with ear ringing and pain.

I don't think my tinnitus is actually that "bad" compared to what some people here report, and think my problem is more with the obsessive fixation than with the sensation itself. Except when I am in a state of extreme stress (cutting my benzo too fast, or sleep deprived, or both), it basically makes the same sound as an old CRT monitor would, and is about the same volume. When I'm in running water, I literally cannot hear the sound even if I consciously look for it. I also think that the fact that I'm consciously looking for the sound when I can't actually hear it is a big part of my problem.

I've got an appointment with my ENT tomorrow to get my hearing checked, which I haven't had done in detail since 2003 or so. I don't expect her to have any breakthroughs to offer me on the ringing; basically I want to satisfy myself that I don't have appreciably more hearing damage now than I did the last time I got my hearing checked. I think this is the case, and I think that having it confirmed will further help convince me that my tinnitus probably isn't actually any 'worse' now than it's been all along, and that what I need to do is break the obsessive/compulsive thinking that goes along with it. From my history with HPPD and hyoid syndrome, I also suspect that if I could snap my fingers and make my ears stop ringing, I would probably feel great for 3 days and then develop a fixation on some other body sensation that feels 'wrong'.

Anyway, I've seen a lot of great discussion on here, and a few things smn (smh? sorry can't remember, benzo brain) said make sense to me. I find myself highly bothered by the sound in my ears, but don't think it's actually that loud. I've seen reference to a "program" that Rob x2 has suggested to a few other people on here, and I was wondering if I could get more details on that. I think I've got as rational a view on all of this stuff as I possibly can right now, and I also think I have the mental discipline to really try a program of some kind and stick to it for a while to see what happens. I'm not looking for a miracle cure, but if I can get back to the point where this is something that I think about from time to time but am not obsessed with for most of my waking hours, that will be a 'success' as far as I'm concerned.

Any suggestions or advice anyone has are greatly appreciated. Given how fixated on this I am right now, I don't think I'm doing myself any favors by reading this forum very much, so I figured I would post a thread, take heed of whatever advice comes back, and then stay offline for a while.

This visual stuff scares the hell out of me... when my eye is tired, I often see some white vibration on black surfaces... can it be the same thing? I never took hallucinogens though, as far as I remember...

oh, believe me, I'm already well down both of those roads. My psychologist wants me to read a Tara Brach book called "Radical Acceptance", it's on the list.

I just had my hearing tested; overall normal hearing but a slight assymetery, my right ear picks up high frequencies better than my left ear does. However, from the report it looks like I'm picking up all frequences in the sub 20-db range in both ears, so I don't have a significant amount of damage. That's essentially exactly what they told me when I got my hearing tested in ~2004, so I don't know if additional hearing damage is a factor in the tinnitus bothering me more now. I'd guess that withdrawing from Diazepam certainly is a factor here, but as a benzo symptom, tinnitus can drag on for months or more after total cessation, so I guess I need to read the Henry/Wilson book, start doing yoga or something and find a way to not go insane.